Health Committee on March 5th, 2013

[The Chair, Conservative, Joy Smith]

Good afternoon, ladies and gentlemen. Welcome to the health committee. We're very pleased to have you here today.

I want to welcome you to committee, Mr. Boulerice. I hope I pronounced your name correctly. It's a pleasure to have you here today.

I also want to welcome Dr. Sellah's guests, Leah, Tasha, and Sarah. I understand you're from the University of Toronto.

[A voice]

That is true.

[The Chair, Conservative, Joy Smith]

Welcome. I'm so glad you came to our health committee today. It's one of the most fascinating committees, but we're kind of biased about that.

We have two fantastic witnesses you're going to hear from today, as well. We have, from Genome Canada, Dr. Pierre Meulien. He's the president. And from Structural Genomics Consortium, we have a PowerPoint from Dr. Aled Edwards, director and chief executive officer. Welcome to both of you.

I'm going to ask Dr. Meulien to begin, please.

[Dr. Pierre Meulien, President and Chief Executive Officer, Genome Canada]

Thank you very much.

Thank you, Madam Chair.

Thank you, members of the committee.

I will give my presentation in English, but I would be glad to answer questions in French, if you'd like, during the question period.

Members of the committee, on behalf of Genome Canada I'm very pleased to contribute to your study of technological innovation, including best practices, in health care in Canada.

As you may know, genomics is the science that aims to decipher and understand the entire genetic information of any organism, any living thing. As such, this science is fundamental to all biological research and can help us gain better insight into a wide range of questions about life. Genomics is a relatively young science, and its potential is rapidly being tapped by new technologies, a reality that has powerful implications for health care and many other sectors in Canada.

Before I present some of the applications and implications of genomics technology in health care, let me briefly say a few words about Genome Canada. Genome Canada is a not-for-profit corporation dedicated to developing and applying genomics science and technology to create economic wealth and social benefit for Canadians. We work in close partnership with six regional genome centres and with the federal and provincial governments, academia, and industry.

We invest in and manage large-scale research and translate discoveries into commercial opportunities, new technologies, applications, and solutions in key life science sectors of the economy. These sectors include human health, of course, but also agriculture, fisheries, forestry, environment, energy, and even mining.

In all of our work, we make it a priority to consider the economic, ethical, environmental, legal, social, and other challenges—we call this GE³LS research—and opportunities related to genomics. We do this to help policy-makers and others understand the broader impacts of the science and to accelerate its acceptance and the uptake of innovations into society.

Since 2000 the Government of Canada has committed $1 billion towards our mandate, and we've succeeded in leveraging this investment to secure a further billion dollars in co-funding over the same period to support our work. More than 60% of that $2-billion total has been invested in health-related genomics research and applications.

We are already seeing a return on that investment as witnessed by Canadian genomics findings that have saved lives, improved treatments for patients, and reduced health care costs.

The biggest genomics game changer for health care in Canada and elsewhere is the unprecedented technological progress leading to our ability to read a person's DNA, which is his or her personal code of life. The time is rapidly approaching when each of us will be able to quickly and inexpensively have our personal genome sequenced and available for analysis for a variety of health-related queries.

The very first human genome was sequenced at a cost of $3 billion and took thousands of scientists over 10 years to complete—and that was done in 2003. Less than 10 years later, any one of the many established genome sequencing centres in the world—and there are three world-class centres in Canada—can do this job in a few days for only $3,000, and the cost is getting cheaper by the week.

Few, if any, other areas of science and technology have undergone such a rapid evolution—where the cost of a significant operation has seen a millionfold drop within a 10-year period.

Obviously, there is considerable speculation among health professionals, policy-makers, and patients regarding how this relatively new, now-accessible technology will be used in the clinical setting. How will this information be analysed, by whom, who will own the data, and how on earth will we integrate this new world of medicine into an already stressed health care system?

In order to answer these questions, we first need to understand what our personal genome can and cannot tell us about our individual health status and our susceptibility to certain diseases later on in life.

The degree to which our genes impact our health differs greatly depending on the condition or disease in question. At one end of the spectrum are single-gene disorders, some of which are extremely rare and others more common, such as cystic fibrosis, certain forms of bleeding disorders—you know the term “hemophilia”—and Huntington's disease. For these diseases, the genetic component is the main, if not the only, driver of the disease. In other words, no matter what environmental factors are at play, if you're unfortunate enough to have a defective gene set for these kinds of diseases, you will most likely have the disease.

At the other end of the spectrum are the much more common chronic diseases, to which many genes may conspire to increase a person's likelihood of falling prey, but which may only manifest themselves if environmental factors are added to the mix.

Type 2 diabetes is a prime example of this situation. There is a complex genetic aspect to most cases of type 2 diabetes, but the disease will express itself preferentially in those who, perhaps, don't exercise regularly, have poor nutrition, and/or consume abnormally high levels of alcohol. Incidentally, the incidence of type 2 diabetes in particular is escalating and driving health care costs to unsustainable levels in most developed countries.

All this is to say that decoding our personal genome plays a pivotal, albeit partial, role in combatting diseases and addressing challenges in the health care system.

So what is actually happening now to make the most of this technology? Our health authorities and provincial and federal ministers of health are asking good questions and challenging the promoters of genomics technology as to how we can integrate it into the health care system in an economically sustainable manner.

Genome Canada, in partnership with the Canadian Institutes of Health Research and the regional genome centres, is rising to this challenge. Last year the Minister of Health and Minister of State (Science and Technology) jointly supported us in launching a new $150 million large-scale applied research initiative in personalized health.

We asked project teams across Canada to deliver proposals that would make use of the best technology available in the world to address serious medical needs, which included an economic rationale as to why health authorities should be proactive receptors for this new technology. In other words, to be successful, the projects would need to justify how they would serve the interests of the health care system as a whole. We are delighted that in the very near future, we will be in a position to announce the results of this competition.

Already genomics is being applied in our heath system in specific areas. For example, genomics is being used to decide appropriate treatments for many forms of cancer. Canada is playing a prominent role internationally as the coordinator of the International Cancer Genome Consortium.

Canadian genomics research has also helped prevent infant fatalities. A Genome Canada-funded study discovered several years ago that there was a genetic basis behind some forms of sudden infant death, linked to the use of codeine by breastfeeding mothers. As soon as this study was published, both Health Canada and the United States Food and Drug Administration changed labelling for codeine, banning it from being used in the postnatal period.

The field of adverse drug reaction is ripe for genomics-based, evidence-driven application, as here once again the genetic component is very dominant in many cases. This is significant given that adverse drug reactions cost the Canadian health system $7 billion per year. Imagine if we could cut that figure just by half.

We will see other major developments over the next three or four years, as progress made in genomics will impact health fields as diverse as epilepsy, autism, schizophrenia, cardiovascular disease and stroke, cancer, and many inflammatory diseases.

This is just the beginning. Canada is beautifully positioned to reap the benefits of this technology, notably because of the world-class research capacity that's been created here over the past decade. The huge potential for efficient integration into the health system is thanks to a research-intensive health-delivery infrastructure and the fact that Canada has some of the best disease-specific clinical research networks in the world.

That being said, there certainly are some broader challenges, which the committee is familiar with, that Canada must overcome to develop and maintain a financially sustainable, modern health care system and to facilitate the integration of genomics efficiently and effectively. These include such things as electronic health records; efficient, modern, and harmonized provincial health technology assessment systems; education and training modules for health professionals in genomics and alterations to the medical school curriculum; a more mature interface between health research and health delivery; and productive research partnerships with the private sector.

Furthermore, patients and patient advocacy groups will have an important voice going forward, and individuals will have to be accountable for maintaining and monitoring their own health and for adjusting behaviours as they go through life. Although challenging, this concept will be key, and government funding will be required to encourage Canadians to partake in healthy living practices.

Genome Canada would like to thank the committee for its time and consideration.

[The Chair, Conservative, Joy Smith]

Thank you, Doctor. That was an extremely insightful presentation. It's astonishing how quickly this industry is growing, isn't it?

Thank you for your presentation.

Now we'll go to Dr. Edwards. I understand you have a PowerPoint presentation.

[Dr. Aled Edwards, Director and Chief Executive Officer, Structural Genomics Consortium]

Yes, we don't know how to talk without them anymore.

I took a page from the politicians' playbook today. I'm not going to answer the question you asked, but I'm going to answer the question I wanted you to ask.

I'm a professor at the University of Toronto and a professor at the University of Oxford, and I run a public-private partnership between Canada and the United Kingdom, and soon Brazil. It's an early-stage drug discovery. It's how to make medicines faster.

I want to get the point across about why we're doing this and the role Canada can play as a leader and not a follower—and we don't often lead.

I think you know the main problems we want to address. You guys, certainly at this time of year when you're making budgets, see the health care costs growing at 6% per annum—at least your provincial counterparts do. There is not a lot of freedom to operate in terms of where you spend your money. As well, we're all getting older, and per person we're not having as many kids, so there's going to be a demographic that works against the Canadian system.

Part of the rationale to invent new medicines is that they're cost-effective. Good medicines do reduce health care costs, but unfortunately the industry as a whole—that's across the world—is not inventing new medicines, particularly for diseases that are chronic and that afflict us all.

Novartis is one of the best drug companies in the world and they're not doing any more research in Alzheimer's disease. They say it's too hard.

In our country, 25% of the population is going to be over 65 in 2050. In Japan, 41% of the population is going to be over 65. That's when chronic disease starts, so we're in trouble.

I'll never be a politician, because there is this script, and I never follow it. So therefore as a politician I would be in big trouble.

Part of the problem with the downsizing of industry is that Canada loses. Boehringer Ingelheim has closed its research facility in Montreal. Merck has closed its research facility in Montreal. This is happening in all the western countries.

If industry is not inventing novel medicines, it's moving to countries that have more customers, so that's China and India. If you don't have anything new to sell, you sell what you have to more people. It's a perfectly logical business move, but it doesn't help us. It doesn't help us with Alzheimer's, and it doesn't help us with the diseases that are going to get us.

I'd like you to, at the end of this, not come out depressed. I think there is a real way that Canada can have an impact on these global problems, not the problems of Canada, but the problems that are in Canada and the world. One of the big problems is who is going to invent the new medicines.

Industry is now wondering why it can't invent new medicines. There is a common agreement among academics like me—professors—and doctors and industry that we just don't know enough about human biology. That's the reason. There is no innovation crisis. There is no hidden agenda. When we start to test medicines in people, most often they don't work, because we got the hypothesis wrong. So we think if we take this drug, our diabetes will go away, and—damn—it doesn't. We have no way of predicting that before we test.

So industry is saying, “Let's collaborate with those smart professors”, but I think they're out of luck, because the professors around the world and the global system of discovery are actually failing the community.

You will remember that the human genome was done. We have 20,000 genes. That's the code. You can say, “Cool! How much research is there on gene number one, gene number two, gene number three?” You can then plot that on a curve.

This graph shows 518 genes and the research per gene. What the hell is going on? Why is everybody working on the same ones? That's because the way we reward ourselves as professors is by obtaining peer recognition. Our friends have to think we're good. It's not money that drives us; it's how well we are doing in our field. You know, “I'm the big stud and I published on this and I get to go to all of these meetings and things”. If you work where no one else is working, no one is going to invite you to Barcelona to give a seminar. No one is going to ask you to do this. You're not going to get any awards. Do you know how to succeed in my field, in professor-land? Work where everyone else works. If you happen to be a little better, you get all the papers.

The reality, though, is that if I get hit by a bus tomorrow, it will not affect the world one bit because there are 100 other people doing the same experiment. It's the system by which we, in Canada, the United Kingdom, the United States, reward professors—it gives us tenure, gives us grants—causing us to be extraordinarily myopic in our research. We all focus on the same thing.

Despite what Pierre's organization has done, and opened up the genome, it can't change our behaviour because we're not driven.

My mom is a grade one teacher. She said, “I thought you scientists like to discover stuff.” I replied, “I know, Ma. That's not it, exactly. We like to get invited to Barcelona and give seminars”.

The problem in translating this basic research into applied research is, now I’m in industry—for example, I work for Merck and I want to cure cancer. Who do I talk to? The smart Harvard professors with the bow ties. Well, how did they get to be Harvard professors? They are successful in working where everyone else is working. So they're going to tell me, “At Merck, you should work on this protein that is a higher priority”. The same Harvard professor goes to all the other companies and tells them the same thing. What happens? All the industry works on the same proteins that we work on. It's an incredible duplication of effort.

Around the world, Canada spends $1 billion to $2 billion on biomedical research. There is $100 billion spent around the world, all focused on 10% of this stuff. There's this whole swath of biology not being investigated. The consequence is that when we go to patients with a putative Alzheimer's drug and it doesn't work, we lose because we didn't know enough. We didn't know enough because we're not investigating the unknown. We're not investigating the unknown because the system doesn't let us. This is the problem I have encountered, and have tried to overcome in our organization.

Another thing you need to understand is that it's not getting any better. Comparing the number of research papers and the number of genes, you can see that before the genome—the monumental event in 2002, and five years after, and last year, or 2009 when I did it last myself—the research is still on the same darned ones.

Of the papers published by professors and doctors, 65% are on the proteins that were hot in 1992. We are very slow to move from our comfort zone. Scientists like to fondle their problems, and we really get into it, and we can't let go. This is to the detriment of a lot.

Now, most fields are like this, but we can quantify this because the genome has only 20,000 genes, and you can actually count them.

So this is the innovation crisis on the planet, not only in Canada.

It was this that caused us to be quite concerned. As one of many examples, here is a science paper. In essence, it says, “These two funny names, map three...are two genes that are important for cancer”. Look where that one lies on the “importance-ometer”.

Forty years since Nixon's war on cancer, a trillion bucks has been spent on cancer research. You know as well as I if you've had a sick relative that it's hard to cure, and we didn't even know about that gene just published last year. We've been working on the same ones everyone has, like the drunk looking for the keys under the street light.

This is a serious problem.

What our organization did was to say that if industry finds it too risky to work down there and academia finds it too risky to work down there—because the systems don't allow us to—what if everybody put a little bit of money into a pot? We said that the purpose of this organization is to learn about the unknown, to get a flashlight and march off into the unknown. Industry and academia both agree that we don't know enough about biology, so there's common interest, and indeed, that's what we did.

What's the opportunity for Canada, here? As researchers, we do this thing, we're extraordinarily competitive. I mean, we work under the light and we're sometimes better, sometimes worse. We're extraordinarily competitive in Canada. We have really smart people. But they're all working in the same area, in general.

How can we in Canada have the biggest impact on the planet, which will have the biggest impact on chronic disease, and which will have the biggest impact on our health care system?

I say, why don't we let America and the EU and China fight for that piece and elbow each other out of the way? One can be first, and the rest can follow.

If we have one dollar to spend, why would we spend it competing with the EU and the United States and China, when we could take a risk? The trouble is, you don't get any credit for working out there as professors so you need to invent a new system, because we promote people based on their ability to compete under the light. We fund people based on their ability to compete under the light. The world works that way and we're not going to change it. You know, there are some things about politics that don't make sense and you can't change it. You have to live with it, and you have to live with that.

How do you get people to go out there? What we did was convince eight—and now nine—companies to donate money to the organization that I run. We have a couple of hundred people in Toronto and at Oxford who do research and put it into the public domain without patents, all for knowledge discovery, all addressing the most important problem in health, which is how to find out more about the human body, and how to find out more about disease so that when drug companies make medicines, they work, and the cure for Alzheimer's will not be by guessing but it'll actually be logical.

It's a completely different system for supporting biomedical research. I think Canada has a unique opportunity. The United States can't do this because they're so fixated on patents, and every university wants to be “the one” and build shiny buildings and compete. The EU can't do it. To get anything done you need 37 signatures from 37 ministers of this or that, and you might as well shoot yourself.

[Some hon. members]

Hear, hear!

[Aled Edwards]

I think we can be incredibly more nimble in this country. We have the game plan to do it. We have all these companies from around the world—these are global heads of R and D coming to Canada to do this. We're starting a new project with Genome Canada to try to find cures for children with rare diseases, something that's really difficult to do. We're doing it in a pre-competitive manner, sharing all the data, not filing for patents, and industry is funding it. CIHR, Genome Canada, and CFI are all helping.

In an incredible happening in July, six R and D leaders from Tokyo and the United States from some of these companies are coming to Ottawa to talk about doing one drug discovery program without patents, from idea all the way to testing in humans.

I think this has the potential to completely transform the way the world discovers medicines. It needs to be done, and I am confident that Canada can lead. If we do it, we will definitely have more efficient innovation in the discovery system, more medicines more cheaply on the five-year to ten-year horizon. We'll get the research arms of pharma back in our country. They're coming. The head of R and D of Takeda, from Tokyo, is coming here in July. The head of R and D from Glaxo in London is coming here in July. We'll be able to focus this research on the unknown, and it's a way for Canada to lead and not follow and not be under that street light with everybody else.

I'm sorry for not telling you what I was supposed to tell you, but I think that was fun.

[The Chair, Conservative, Joy Smith]

Actually, Dr. Edwards, it is refreshing to hear that. You're an expert in the area, and this is why you're before the committee today, teaching the rest of us. So we thank you very much.

I'm sure there are lots of questions from the committee, so we're going to begin.

We're going to begin with Dr. Sellah.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

Thank you, Madam Chair. I appreciate your kind words for my witnesses.

Mr. Meulien and Mr. Edwards, I understood your presentations perfectly. Thank you for coming here to explain genomics to us, as well as its importance and its impact on the health of Canadians.

I fully understood what Mr. Edwards was saying about Canadian practices and the importance of being a leader rather than a follower. That being said, a serious concern remains when it comes to genomics, and that is the confidentiality and security of genetic information. There are also concerns about the potential for discrimination based on genetic information by employers and health insurance companies.

In 2008, the United States adopted the Genetic Information Nondiscrimination Act to protect individuals against discrimination related to their genetic information by health insurers and employers.

Could you comment on the challenges related to the patenting of genetic discoveries? And do you think that Canada should pass legislation similar to the Genetic Information Nondiscrimination Act in the U.S., to protect Canadians against genetic discrimination?

[Dr. Pierre Meulien]

I think the situation that exists in the U.S. and other countries that have adopted new legislation on genetic information discrimination is quite different than Canada's. Canadians are, in my view, well protected. I know that some will disagree with me, but I don't think we need to change the law. I think we are protected.

The situation in the U.S. is very different because people there are not entitled to a publicly funded health care system. That is not the case in Canada. Here, everyone is entitled to receive health care.

I think it's a very different situation in Canada and in other countries that have adopted a law. Canada has a health system that is solely funded by government. People do not have an issue when they go to find health care: they will be treated. In the States, it is completely different.

Please note that the law in the States did not include life insurance. Life insurance was excluded from that law. It only protects people who cannot be discriminated against because of their genetic predispositions when they go for health care and they have to pay for health care insurance.

The situation in Canada is very different from those in other countries that have adopted a law. I'm not a legal person, but if it is the Canadian Human Rights Act or whatever law that protects the Canadian citizen, the Canadian citizen is well protected from genetic discrimination, I think, as it applies to health services.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

Thank you.

In that case, does Canada have guidelines for the patenting of genetic discoveries?

[Dr. Pierre Meulien]

In terms of patenting genetic information, I believe that Canada lies between Europe and the United States. As you know, even in the United States there are High Court rulings that are in waiting as related to patents on breast cancer genes and other genes that have been patented in the U.S. In Europe, patenting of genes is not permitted. There is no patenting of genes allowed in Europe.

In Canada, it is I think in between the two. We promote a very open access model for all of the genetic information we produce in terms of the projects we fund, so I believe that as we go forward there will be so much data out there that most of the data will be in the public domain for the patents on the front end of the value chain.

What my colleague here didn't say is that the Structural Genomics Consortium is responsible for producing over 25% of the world's whole domain of protein crystal structures, and 25% of that knowledge comes from his group. None of that is protected. It's one of the rules of the Structural Genomics Consortium. They will not patent any knowledge within that structure.

If pharma companies want to compete further down the value chain, they can, and they will. They'll bring in knowledge that's available to everyone, bring that in-house, and then use their proprietary technology to build a case.

I'm sorry. I'm going on.

[The Chair, Conservative, Joy Smith]

No, that's fine. Thank you, Doctor.

I'll just give you a little signal when we're over time, Dr. Meulien.

[Dr. Pierre Meulien]

Please do.

[The Chair, Conservative, Joy Smith]

We'll now go on to Mr. Lizon.

[Wladyslaw Lizon, Conservative, Mississauga East—Cooksville, ON]

Thank you very much, Madam Chair.

To be honest, I don't know where to start.

Thank you, gentlemen, for coming here to the committee.

First I would like to ask, Dr. Meulien, if that government fund that you mentioned is still ongoing? Was it renewable every so often?

[Dr. Pierre Meulien]

On the personalized health competition?

[Wladyslaw Lizon, Conservative, Mississauga East—Cooksville, ON]

Yes.

[Dr. Pierre Meulien]

This $150-million amount of money was gathered through different funding sources, including CIHR. CIHR put in over $20 million, we put in $45 million, and provincial governments put in a lot of money. Pharmaceutical companies are joining some of these projects, so there's private sector money in that $150-million pot. We have not spent one dollar of that yet. Those projects are about to start. They will be announced by both the Minister of Health and the Minister of Industry very soon.

You will see when they are announced that each one of those projects will demonstrate value in a particular disease setting where we have an opportunity to move genomics into the clinical setting, from the academic lab into the clinical setting. That program will run for four years. We hope that we will be re-funded again from the federal government so that we can rerun that program in a few years' time.

[Wladyslaw Lizon, Conservative, Mississauga East—Cooksville, ON]

You mentioned in your opening remarks that a special application of the findings in genomics in clinical settings will change the way that people are treated. In your view, how is it going to work? Based on some genetic code, will a doctor be able to assess the health risks of the person, and then that's how he or she will plan the treatment down the road?

[Dr. Pierre Meulien]

Yes, it's exactly that.

For any given disease, especially more complex diseases—cancer, epilepsy, autism, some of these more complex diseases—we're understanding that it's just not one disease, it's many diseases. Through the genome, we can classify whether people are type 1, type 2, type 3, type 4, or whatever stratification they lie in. Based on that molecular profile, the treating physicians will be able to say, “Well, you know this epileptic patient here, the last thing we should do would be to give that person anti-epileptic drug x. That's the last thing we should do, because all that's going to happen is that we will do harm to that person.” It will reinvent, if you like, the way medicines are prescribed based on an individual profile. We're all very different. In this room, we are all very different. We're going to react differently to different drugs. This is what the genome is telling us.

[Wladyslaw Lizon, Conservative, Mississauga East—Cooksville, ON]

I have another question, but I will ask you when I have time.

I would like to ask you a question, Professor Edwards.

I really listened with interest when you described the problems we have in the research of genomics. What would you propose would be the best solution? Anybody who's not familiar with the issue would wonder why people don't get together and build 20,000 separate labs, give them money, and assign one gene to everyone. Would that solve the situation?

[Dr. Aled Edwards]

You should be in charge of health funding.

[Voices]

Oh, oh!